Psoriasis and Sleep

People with psoriasis often suffer with sleep problems.  A recent study in the British Journal of Dermatology found that 25% of people with psoriasis suffered with clinical insomnia and more than half were poor sleepers.

Psoriasis-and-Sleep-2

Poor sleep can have a negative impact on your skin, overall health and well-being.  There are things you can do to improve the situation and many apps, books and websites which can also help.  Try the resources listed below:

Books:

Apps:

Websites:

Remember to moisturise before bed to reduce any itching.

Good luck and sweet dreams.

 

 

Psoriasis and Pain

Psoriasis is a condition causing physical pain as well as emotional pain.  How you respond to the pain determines how much suffering you will experience.  Some ways of reacting to psoriasis-related pain can make the situation a whole lot worse.

Although it is a complex issue, this infographic explains the relationship between psoriasis, pain and suffering:

ACT, pain and psoriasis

Acceptance and Commitment Therapy is an alternative to suffering.  It teaches you to acknowledge pain but stop it defining your life and making things worse.

For more information I would highly recommend Facing the Storm by Ray Owen and The Reality Slap by Russ Harris.  Or watch this powerful talk ‘Psychological flexibility: How love turns pain into purpose’ by the Clinical Psychologist Steven Hayes.

There might not be a cure for your psoriasis (yet) but you can reduce your suffering.

 

If you found this helpful please share it and spread the message.  

Together we can cope with psoriasis.

Psoriasis and Shame

I had my hair cut today.  If like me you have psoriasis on your scalp, you’ll understand the stress associated with such an everyday activity.

I can’t face sitting in a busy salon with a dark towel over my shoulders.  No matter how good the haircut, the embarrassment would be too much.  Luckily, I have a kind and understanding hairdresser who cuts my hair in the back room of her house; but even then I cringe at the flakes that flurry onto my shoulders and the floor.  I couldn’t bear to have strangers witness that as well.  John Updike, the American author, captured the feeling of shame he also felt about his psoriasis:

Nov. 1. The doctor whistles when I take off my clothes.  “Quite a case.”…….As I drag my clothes on, a shower of silver falls to the floor.  He calls it, professionally, “scale”.  I call it, inwardly, filth.

Vladimir Nabokov, another writer with psoriasis, also described his feelings of shame and humiliation “about my bloody underwear, blotchy mug and the scales pouring down on the carpet”.

I’m not alone in feeling ashamed.  A study of over 900 people with psoriasis found that shame was one of the most common emotions experienced (Sampogna et al, 2012).  Shame had a serious impact on the lives of people in this study; higher levels were associated with a lower level of educational attainment and difficulties in daily activities.  Participants didn’t seem to get used to having psoriasis: the longer they’d had it, the more shame they reported.

It’s shame that makes us conceal our skin and avoid certain situations. Shame stops us going swimming, wearing t-shirts on hot days, and relaxing whilst getting our hair cut. It’s shame that stops us pursuing our goals and fulfilling our potential.  Shame can even drive us to self-medicate with alcohol, drugs and food.

Our feelings of shame can also affect our physical health.  Feelings of shame cause our bodies to release various stress hormones including cortisol and pro-inflammatory cytokines (Dolezal and Lyons, 2017).  Over a long time, this physiological consequence of  shame will cause wear and tear on the body and increase the likelihood of various health conditions such as weight gain, heart disease and hardening of the arteries.

So what can you do about it?
  • Your shame is not helping you.  Acknowledge your feelings, they’re a normal human reaction to having psoriasis.   Regard yourself with kindness, forgiveness and compassion.
  • Get support from your family and friends.  One recent case study reported how family therapy for a 46 year old woman with psoriasis not only helped her manage  feelings of shame but also cleared her skin (Shah and Bewley, 2014).
  • Notice your critical and judgmental voice – is it telling you how disgusting you are?  It’s not helping you and you wouldn’t use it on a loved one or a friend with psoriasis, so why turn it on yourself?
  • Remind yourself you have an autoimmune disease and it’s not your fault.
  • Remember most people are too concerned with their own faults to be judging you.
  • Perfection is a myth anyway.

We are psoriasis warriors – we shouldn’t feel ashamed – we are amazing!

Please share this if you enjoyed it.

 

References:

  1. Updike, J. (1976). From the Journal of a Leper. The New Yorker, July 19, 1976 P. 28.
  2. Nabokov, V. (2017).  Letters to Vera (edited and translated by B. Boyd and O. Veronica). New York: Alfred A. Knopf.
  3. Sampogna, F., Tabouli, T., Abeni, D. et al (2012). Living with Psoriasis:Prevalence of Shame, Anger, Worry and Problems in Daily Activities and Social Life. Acts Derm Venereol; 92: 299-303.
  4. Dolezal and Lyons, (2017).  Health-related shame: an affective determinant of health?. B. Med Humanit; 43: 257-263.
  5. Shah A. and Bewley A. (2014).  Psoriasis: ‘the badge of shame’.  A case report of a psychological intervention to reduce and potentially clear chronic skin disease.  Clinical and Experimental Dermatology; 39 (5): 600-603.

Psoriasis and diet.  Are you what you eat???

Is there a link between psoriasis and diet?

Like me, I’m sure you’ve asked your dermatologist this question only to be told there’s no evidence.  But as a scientist I know just because there’s no proof, it doesn’t mean there’s isn’t a link. And as a long time psoriasis sufferer it seems more than logical that what I eat affects my health and skin.

The important thing to keep in mind is that these are difficult studies to design and run.  At the very least you’d need 2 groups of similarly matched people, with the same sort of psoriasis and treatments.  The first could carry on eating as they always do and then the ‘experimental’ group would have to follow your diet for a number of weeks – without deviating from your diet plan.  Anyone who knows anything about the diet industry will tell you that most people have trouble sticking to a prescribed diet.  So your experimental group would not only have to be large in number but also motivated, willing and able.  And of course you’d need someone to fund the study in a climate where big pharmaceutical drug trials are where the money’s at.

An example of one such study was carried out in Croatia (Rucevic et al, 2003).  The brave experimental group ate a low energy diet consisting of nothing but fresh and boiled vegetables, fruit, rice, bread and low fat dairy for 4 weeks while they were hospital inpatients.  The authors report significant changes in serum lipids but didn’t report on the differences in skin between the 2 groups.  We don’t know how many of the original 42 people made it to the end of the trial and how many popped out for a sneaky burger on the weekend and kept a bar of emergency chocolate in their hospital locker.

In 2018, the Medical Board of the National Psoriasis Foundation looked at the results of 55 studies.  The strongest evidence was for the benefits of weight loss for psoriasis in overweight people but they concluded overall the evidence is just not strong enough to draw any firm links between diet and psoriasis.

There’s lots of anecdotal evidence, much of it emerging from times of war and famine.  It has been alleged that in post World War I Germany, psoriasis all but disappeared from the population.  The same was reported in Dutch prisoners of war in WWII concentration camps.

This fits with reported findings from 70s Russia.  The Medical Institute of Dermatology in Moscow reported on their fasting treatment where people with psoriasis ate and drank nothing except mineral water and vitamins for 2 weeks and had daily enemas.  Not surprisingly their subjects lost lots of weight and there was some improvement in skin which reversed as soon as they started eating normally again.  It would seem that a low energy diet reduces the severity of psoriasis. But just to throw a spanner in the works, there are also reports of an increase in the incidence and severity of psoriasis during WWII (Lombolt, 1963).

The incidence of psoriasis is reportedly low in Eskimo and Danish populations which have drawn some researchers to link this with their high intake of fish oils and fatty acids.

So while there are a fair number of studies and lots of anecdotal evidence we are still left in the dark. As for me, from my early teens to the present day I’ve been following different diets in an attempt to control my psoriasis symptoms.  I’ve tried dairy free, gluten free, vegan, vegetarian, Pagano, sugar free and the list goes on.  I have often wondered whether the pursuit of a ‘psoriasis clearing diet’ means I’m restricting what I eat unnecessarily.  I also have concerns about whether these diets can cause a form of eating disorder or orthorexia – but that’s for another post.

I’ve been following a whole food plant based diet for the past year and I’m feeling great about it.  I still have psoriasis but it’s nowhere near as bad as it normally is this time of year.  With over 30 years of my own trial and error, I have a fair idea of the food which makes my skin flare up and what I need to stay away from to help it calm down.  But I could be wrong……..

References

Makeev V. D. (1976) Vest. Derm. Vener., 4 58.

Rucevik I. et al (2003) The Role of the Low Energy Diet in Psoriasis Vulgaris Treatment Coll. Antropol. 27 Suppl. 1, 41–48.(https://pdfs.semanticscholar.org/f125/7dd04c70370c563cd658387ec24db2b4d76c.pdf)

Lombolt G. (1963) Psoriasis, 26, 123.

Herschel S et al (1969) Arch.Dermatol., 99, 580.

How to support your child with psoriasis

A significant proportion of people with psoriasis first develop it in childhood.  As a parent it’s incredibly hard to watch your child struggle and you can be left feeling quite helpless.  Here are my top tips for supporting your child:

Listen

Your instinct will be to try and fix things.  But you can’t.  Listening is the most important thing you can do.  Your child needs you to hear how tough things are.  Reflect back what you heard so they know you understood:  “It sounds like things were pretty tough today”.  If you don’t know what I mean then watch this short animation about empathy.

Prepare them

People will ask questions, point, stare, grimace.  Unless you plan to keep your child at home or covered up for the rest of their lives then get them prepared to deal with unwanted attention.  Teach them the Explain-Reassure-Distract method and practice, practice, practice.

Help them get control

Encourage them to speak in clinic appointments and take responsibility for their own treatments.  Try not to nag and remember to give lots of praise if they do their treatments by themselves.  For younger children consider using a reward chart.

Build their confidence

Tell them they’re wonderful and all the reasons why.  Are they funny, kind, clever or creative?  Your child is much more than skin so remind them of that.

Don’t force them to uncover

Don’t make them show their skin if they don’t feel ready.  It might not look awful to you but it takes a lot of courage to show skin covered in psoriasis to the world.  If they’re not ready it will just be horrible.  So what if they want to wear trousers instead of shorts?  Join them!

Inspire them

Watch movies with inspiring characters.  Read books where the main character has imperfections or even psoriasis.

Get support for yourself

There’s nothing more painful than seeing your child suffer and having no control.  Seek support for yourself; try mindfulness, reach out to friends or join a forum.

Could childhood stress cause psoriasis?

Did you know that stressful experiences in your childhood may have increased your chances of developing psoriasis?

Known as ACEs, Adverse Childhood Experiences are anything but ace. They include physical, emotional and sexual abuse, witnessing domestic violence or growing up with household substance abuse.

It was always clear that such traumas could affect people as adults but now researchers across the globe are discovering that they have an even more powerful impact on your health as an adult.

Having a history of ACEs increases your risks of health-harming behaviours such as smoking, drinking or eating too much of the wrong stuff but what’s even more fascinating is that these experiences have an effect on the way the brain develops in childhood.

People who have a certain level of ACEs experience changes in their neurological, immunological and hormonal development. There seems to be something about being in threat mode frequently during childhood that wires the brain to be prepared for danger increasing tissue inflammation and resulting in long-term changes in immune response.  This leads to tissue damage and long-term wear and tear on the body.

There is convincing evidence that people who experience ACEs are at much higher risk for many long term health conditions like auto-immune disorders like psoriasis, cancer, lung disease, heart disease and mental health illness even when you’ve controlled for differences in lifestyle choices.  They can even shorten your life by 20 years and the more ACEs you have the higher your risk.

In one long term study (Danese et al, 2007), childhood abuse was associated with elevated CRP levels, white blood cell counts, and other markers of inflammation 20 years later.

But can we do anything about it?
Years of research have made the link indisputable but the next big challenge is what to do about it. Obviously prevention and early intervention is key but what about those people in adulthood whose traumas are in the past?

I have psoriasis and a fairly significant ACE score. Do I need to just accept that this is the way I developed or can I reverse things?  The research is still in it’s infancy.  We know we can help people cope with trauma but what we don’t know is whether that reverse the neurological and immunological changes?

Helping adults heal is the next big challenge.  The brain has plasticity and can change at any age, so perhaps meditation and mindfulness practice can help to improve things.

It’s also important to remember that whilst a higher score means your risk is higher, it doesn’t determine your future.  Many factors such as a loving parent, grandparent or supportive school teacher can promote resilience so that lots of people with high scores do very well indeed.

One final thing to think about: I developed psoriasis when I was 13 years. I did have adverse childhood experiences to contend with – but psoriasis was another enormous ACE to add to my load and now I wonder for me whether it all became a bit of a vicious circle.

If you want to know more, then watch this excellent TED talk: Nadine Burke Harris TED talk

or watch this informative short animation: ACEs // Public Health Network in Wales

You can score your own ACEs here: Take the ACE quiz

Reference

Danese A. et al (2007). Childhood maltreatment predicts adult inflammation in a life-course study. Proc Natl Acad Sci U S A; 104(4):1319-24.

So you’ve got psoriasis? Cheer up love, it could be worse

imageYou know logically there are far worse things to have than psoriasis.  A glance at the evening news will tell you there are hideous things happening to millions of people across the world at every moment.  But someone telling you that having psoriasis is not so bad by comparison does not make you want to put on your dancing shoes and throw a celebratory party.  It makes you want to throttle them. And then put on your dancing shoes to kick them when they’re down on the floor.

I’m not going to tell you to cheer up.  I’ve had psoriasis for over 30 years.  I know all about the soreness, the flaking, the pain, the embarrassment, (pause for breath), the restrictions to life, the unpleasant treatments, the uncertainty and the horrible out of control feeling it brings but I honestly believe you can be happy despite having this condition.  It’s just not as simple as someone telling you to look on the bright side because it could be worse.

There’s an exciting and developing field of psychology devoted to helping people feel positive and happy whatever their circumstances.  If you think of a scale with misery at one end and ecstasy on the other, traditionally a psychologist would aim to help someone move from the depression end to somewhere in the middle of the scale; a neutral point.  Recently psychologists have begun to focus on helping people move towards the happiness end of the scale instead of just aiming for an absence of low mood.

Positive psychology therapy involves techniques such as learning to savour the moment and connecting with other people and there is good scientific evidence that these strategies can help with clinical depression.  You can read more about these simple yet powerful techniques on the Action for Happiness website.

It would seem that being happy has more benefits than the simple joy it brings.  In the 1930s, a large group of Catholic nuns were required to write a 2-3 page autobiography before entering the convent and then went on to live very similarly structured lives.  Many years later psychologists discovered and analysed these autobiographies rating the nuns’ cheerfulness.  They discovered that the positive nuns lived longer by 10 years.  A whopping 54% of cheerful nuns reached the age of 94 years compared with only 15% of the least cheerful ones.  Evidence that it’s not only nice to be happy, it’s good for you too.

Living with psoriasis is not easy.  Often it feels like I’ve turned up to an elegant cocktail party in fancy dress by mistake.  Everyone else looks like they belong to the Kardashian clan and I’ve come as Hellboy.  Oh the shame of being the only guest to miss the ‘bring your flawless skin’ memo.

So yes, it could be worse and yes, it could be better.  The long and the short of it is I have psoriasis and there’s no cure.  I struggle with accepting that but I am determined to enjoy my life in spite of it.  I want to be happy.  I am more than skin.

Follow my blog for tips about coping with psoriasis.

Living with psoriasis. Are you MAD?????

psoriasisPsoriasis is hateful.

I developed it as a young teenager, just what I didn’t need at a time when my body was already going through some huge and alarming changes.  I’ve spent my life since in a battle against psoriasis, seeking out new tactics to beat it into submission and most often going undercover; hiding my skin away from the world, pretending to be normal while all the time, under my clothes, I’m plastered with red hot patches of skin, sore, flaking and peeling.  It’s been a long, hard campaign and in reality my enemy doesn’t even exist.  It’s just me fighting me.  At times I’ve felt very low and I’m not alone.

So many people with psoriasis suffer with clinical levels of anxiety and depression.  People with psoriasis can even feel suicidal.  I understand this.  It’s a difficult condition to live with; painful and unsightly and in a world where appearance is so important, it’s easy to feel disgusting and ashamed.  It’s hardly surprising this would affect your mood.

A review ‘Psoriasis and Associated Psychiatric Disorders’ was recently published in the Journal of Clinical and Aesthetic Dermatology.  The authors reviewed research papers published between 1990 and 2015 looking at psoriasis and mental disorders.  The most prevalent psychiatric problems were sleep (more than 50% of people with psoriasis) and sexual disorders (a depressing 71% of people with psoriasis).  They also found papers reporting an association with schizoid traits, schizophrenia, substance abuse, bipolar disorder and eating disorders.

Problems with dependency and eating may be understood as coping strategies and of course you don’t sleep or feel too sexy with all that itching and flaking going on, but the connection with bipolar disorder and schizophrenia is less easy to understand.

From closer reading, it would seem that the association with schizophrenia is mainly based on a paper which found that people with schizophrenia have a higher risk for psoriasis rather than the other way around.  It’s a bit like saying that a large number of newspapers are published online, but that doesn’t mean that a high rate of online content is newspapers.  Some of the other evidence reported in the review came from a small number case studies where psoriasis cleared up after anti-psychotics were administered.   When psychiatrists talk about schizoid personality or traits the main characteristics are social isolation, intimacy avoidance and restricted affections.  Well duh.  It’s hardly surprising to act like this when you are covered in psoriasis.

Whichever way you look at it, having psoriasis can make you feel bonkers at times.  But it doesn’t have to be that way.  I have one, unique life, albeit a life marred by flaking skin, but I want to be happy and enjoy it.  Sure, I would bite the hand off someone offering me a cure, but until that happy day comes, I want to make the most of my life in spite of my skin.  I believe I can.  There are many psychological strategies and techniques to help you cope with your skin.  You can learn these on your own with the many self help resources available online or find a good psychologist to lead the way.

Reference

Ferreira BI, Abreu JL, Reis JP, Figueiredo AM. (2016). Psoriasis and Associated Psychiatric Disorders: A Systematic Review on Etiopathogenesis and Clinical Correlation. J Clin Aesthet Dermatol;9(6):36-43.

 

Thumb to finger relaxation

IMG_1472The ability to relax can be very helpful, especially when you have a chronic illness like psoriasis.  If you suffer with pain then learning to relax is even more important.  Pain leads to tension which can lead to more pain, more tension on and on in a vicious cycle.Slide1

Relaxation can help with the tension and stop pain from getting worse.  It’s a skill like any other and requires lots of practice.  It’s important to practice at times when you aren’t tense as well as using it as a strategy to cope at more difficult times.  The more you do it, the more effective it will be.

There are many different ways to relax.

This is one method I love.  You can use it when you are tense or irritable, when your pain is getting worse and before bed to help you get a good night’s sleep.

Thumb to Finger Relaxation

Get comfy and remove distractions like the television and your mobile.

Touch your thumb to your index/pointer finger.  Keep it there and think about a time when you felt physically tired in a healthy way, for example after exercise or a strenuous activity.  Imagine you have just swum several lengths or jogged some distance.  Spend a minute or so remembering that feeling of ‘healthy fatigue’.

Touch your thumb to your middle finger and as you do, remember a time when you felt loved and loving.  It could be a warm hug or embrace or a touching conversation.  Spend a couple of minutes remembering that feeling.

Touch your thumb to your ring finger and as you do remember the nicest compliment anyone paid you. What did they say?  Try to accept that compliment now.  Truly believe it and pay the person who gave it to you the respect of accepting it whole-heartedly.  Remember that feeling for a minute or so.

Touch your thumb to your little finger and as you do remember the most beautiful place you’ve ever been.  Visualise it in your mind.  Remember the scent and noise, the ambiance and the temperature.  Enjoy this image for a minute or two.

That’s it.

You can do this exercise anywhere and it only takes around 10 minutes.

If you enjoyed that, why not try a mindful minute.

Please comment below or share if you found this useful.

With thanks to my beautiful hand model in the photograph.

The Shame of Psoriasis

What are people thinking about you when they look at you?

OMG how ugly
She looks dirty
That’s disgusting
I don’t want to go anywhere near him in case I catch it

It’s tough to live with those thoughts going around your head and little wonder we try to hide our skin and cover up.

People with psoriasis often rate other people’s reactions to their skin as the main difficulty with the condition.

But are you sure you’re always right about what people are thinking?

A psychology experiment carried out in 1980 took a group of women and made them up with fake scars. The women, who thought they were ‘disfigured’, then had a conversation with a stranger who knew nothing about the experiment. After the conversation, the disfigured women felt stigmatised. They were more aware of the stranger’s behaviours like staring and related this to their appearance. They thought the stranger was reacting negatively to the scar and this affected how favourably they rated the stranger. What women didn’t know was the experimenters had actually removed the scar before the conversation took place so any negative reaction to the (non-existent) scar was imagined. This study tells us that believing you look different heightens your awareness of other people’s behaviour and you are more likely to interpretate their behaviour as negatively related to your appearance – whether or not that is actually the case. Because of this, you are less likely to warm to strangers.

There’s no doubt some people are rude, unpleasant and insensitive. I’ve met a fair few of them. I’ve written about one particularly upsetting encounter here. But perhaps it’s not quite as bad as you think. Try some CBT and see if there is a different way of thinking?

 

Reference

Kleck RE and Strenta A (1980). Perceptions of the impact of negatively valued physical characteristics on social interaction. Journal of Personality and Social Psychology, 39 (5), 861-873.